Related

EDMONTON — Donna Romanuik stands up from her wheelchair and gives husband Chris a hug and kiss before he heads to the starting line alone for Sunday’s annual Multiple Sclerosis Walk in Edmonton.

It wasn’t supposed to be like this.

Romanuik was supposed to walk the 15 kilometres with him. In fact, that should have been nothing for the woman who a year ago vowed she would run a marathon this summer.

When she said it, Romanuik had just returned from India where she had undergone the controversial “liberation” treatment for her multiple sclerosis, and she was exhilarated by what it had done for her.

The fogginess in her head was gone, so was the fatigue. Her balance was good, her mobility, strength and endurance improved.

“She came back and she could walk holding her husband’s hand instead of holding on to her husband,” remembers longtime friend Pat Semrok, who stops by the tent where Romanuik is volunteering before the run. “She was able to do little things that everybody else takes for granted for being able to do. It was a miracle.”

Liberation is an unproven therapy based on the theory of an Italian neurologist that stenosis, a narrowing or blockage of veins in the neck which drain blood from the brain, results in a medical condition known as CCSVI or chronic cerebrospinal venus in sufficiency, which may cause MS symptoms. It has also been recently linked to Parkinson’s disease and ALS.

Removing the blockage with a procedure similar to balloon angioplasty known as PTA or percutaneous transluminal angioplasty, was found to improve blood flow which in turn improved balance and walking, while reducing dizziness, fatigue, muscle spasms and incontinence.

The exact cause of MS is unknown, but environmental and genetic factors are suspected. There is no cure but symptoms can be managed.

PTA does not meet Health Canada’s stringent requirements, so dozens of Canadians have spent thousands of dollars to travel to private clinics and hospitals in places such as India, Poland and Costa Rica to have it done. North Americans can’t even get the imaging test here that would tell them for certain if their jugular veins are blocked because it is an invasive procedure with no proven benefit.

In India, Romanuik learned her veins were more than 50 per cent blocked making her a candidate for PTA. For six weeks after she felt liberated.

“I can’t explain the feeling of normalcy I had for those six weeks,” she says. Then Romanuik’s condition began a downward slide, a common experience, judging by their blogs, for most people who have the treatment.

If zero was where she was before undergoing the treatment and 10 is where she was right after it, her MS symptoms are now at three, Romanuik says, down from a seven, a month ago. She’s certain the regression means her veins have become blocked again because there was no stent put in to hold them open.

A couple of people who stop by the tent and last saw Romanuik getting around with just a cane in the fall, are surprised to see her sitting in a wheelchair.

“I expected her to still be walking around with a cane,” says one woman before walking away. “It’s very sad.”

“Honestly, it’s just because we took the (train) and I didn’t want to walk all that way,” the ever-upbeat Romanuik interjects. “I can walk.” Though not without something or someone to hold onto.

This doesn’t mean liberation is a failure, Romanuik says.

“The way that I felt after the procedure and the things I could do without any effort, without thinking, is undeniable. There’s no way it was a placebo effect.”

The improvements are captured on a video shot by her husband Chris in India right after the treatment. What makes her cry whenever she sees it, is how easily she hopped up on a bed and swung her legs up off the floor, movements she used to have to think to do and that took time to accomplish, and, that she’s back to doing the same way again.

“The truth is, until a proper jugular stent is developed there’s no sense in having your veins opened because they’ll just close again,” Romanuik says.

Some doctors who do the treatment use stents made for arteries to keep the veins from recollapsing, “but it’s not the proper stent, and if it dislodges and goes to my heart, it will kill me,” says Romanuik, a 46-year-old mother of three.

A funnel-shaped stent is currently under development, she notes. “If they can design something like that, that would lodge itself in the vein and keep it open, that’s the cure, that’s going to cure me.

“If my vein had stayed open, I’d be running a marathon right now, I would be walking with Chris in this walk today,” she says.

Many people in the MS community believe in liberation or CCSVI as the “miracle cure.” An advocacy group calling itself CCSVI Alberta and even had a tent in the staging area of the MS run for the first time this year. Here volunteers dispensed information and collected signatures for a petition asking to have CCSVI testing and treatment made available in Alberta and Canada.

Romanuik and her husband took part in a meeting last year with Alberta Health Minister Gene Zwozdesky, top neurologists and other medical specialists where the minister approved setting up a registry to statistically track Albertans with MS who have had liberation treatment.

Zwozdesky also approved a three-year observational study to monitor the CCSVI research being funded by the provinces of Saskatchewan, Newfoundland and Manitoba.

Romanuik doesn’t need any of that to say she would have the treatment again.

“I’d have it done again in a heartbeat, but only if there was a proper stent. I would even be the guinea pig, the first in line.”

Comments

We encourage all readers to share their views on our articles and blog posts. We are committed to maintaining a lively but civil forum for discussion, so we ask you to avoid personal attacks, and please keep your comments relevant and respectful. If you encounter a comment that is abusive, click the "X" in the upper right corner of the comment box to report spam or abuse. We are using Facebook commenting. Visit our FAQ page for more information.

Almost Done!

Postmedia wants to improve your reading experience as well as share the best deals and promotions from our advertisers with you. The information below will be used to optimize the content and make ads across the network more relevant to you. You can always change the information you share with us by editing your profile.

By clicking "Create Account", I hearby grant permission to Postmedia to use my account information to create my account.

I also accept and agree to be bound by Postmedia's Terms and Conditions with respect to my use of the Site and I have read and understand Postmedia's Privacy Statement. I consent to the collection, use, maintenance, and disclosure of my information in accordance with the Postmedia's Privacy Policy.

Postmedia wants to improve your reading experience as well as share the best deals and promotions from our advertisers with you. The information below will be used to optimize the content and make ads across the network more relevant to you. You can always change the information you share with us by editing your profile.

By clicking "Create Account", I hearby grant permission to Postmedia to use my account information to create my account.

I also accept and agree to be bound by Postmedia's Terms and Conditions with respect to my use of the Site and I have read and understand Postmedia's Privacy Statement. I consent to the collection, use, maintenance, and disclosure of my information in accordance with the Postmedia's Privacy Policy.